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Skeptimedia
Skeptimedia
is a commentary on
mass media treatment of issues concerning science, the
paranormal, and the supernatural.
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Skeptimedia replaces Mass Media Funk and Mass Media Bunk. Those blogs are now archived.
Hope is all you need - just ask Jenny McCarthy
26 Feb 2010. I have known several parents who have watched their children suffer for years with mental illness or brain disease. I have witnessed the unspeakable joy those parents have experienced at any sign, no matter how small, that gave them the tiniest glimmer of hope that one day their child would be able to live a relatively happy and independent life. And I have witnessed the dark hour when those hopes were dashed on the rocks of suicide. Just when you think the pain of watching your child suffer can't get any greater, the pain of their not being able to suffer any longer overwhelms. It can't get any worse than this, can it?
Unfortunately, it can.
Try to imagine what it would be like to have a child "who, for most of his life, would often scream and bang his head on the floor, while being unable to speak." According to news reports, Gigi Jordan was the parent of such a child. Jordan was a trained nurse, a Manhattan socialite, and had a job as a high ranking pharmaceutical company executive. She left that world behind, we're told, to devote all her time to her son, Jude Michael Mirra. "Friends say she tried for years to help Jude, however ultimately grew defeated over her inability to make him better and gave up."
Earlier this month, Jordan brought Jude to the Peninsula Hotel, where she paid cash for two nights in a $2,300-a-night suite. Jude was found dead in his pajamas, face up on the bed. His mother was found on the bathroom floor "babbling incoherently." Prosecutors say that Jordan gave her son a fatal overdose of prescription drugs and took some pills herself. She's charged with second-degree murder. For eight years Jordan's hopes for her son gradually withered into nothing. When there is no hope that the pain will stop, the only option may seem to be to end the life that suffers.
Stories like this are rare, thankfully, and sad as they are they serve to help us understand the popularity of people like Jenny McCarthy. Many in the skeptical community see McCarthy as evil, dangerous, and causing great harm. She is, but she's also a parent who loves her child more than anything else in the world and she gives hope to many parents of autistic children. The hope may be false hope, but it should not be too difficult to understand why, for many parents of autistic children, false hope is better than no hope at all. Parents may have given up hope that their child will attend college, find a companion for life, and live somewhat happily ever after. But they will never give up hope that their child will stop suffering, begin to show some affection to them, and make some strides toward independent living. Since McCarthy offers hope and science-based medicine seems to offer no hope, many parents reject the latter and follow McCarthy, even though the evidence is overwhelmingly against almost everything she claims about the causes and treatments for "recovery" (her word) from autism.
Karl Taro Greenfeld has written a piece about McCarthy for
Time magazine that focuses on how
this "Playmate turned
pseudoscientist, the fart-joke teller cum mother warrior" has
risen to the role of leader in part of the autism community
despite her breathtaking lack of knowledge and understanding of autism. What she knows about her subject could
fit in a thimble, yet she's written three books about autism, is
a frequent guest on talk shows, and has her own school for
autistic children. Soon she'll be appearing on her own talk
show, thanks to Oprah.
McCarthy's appeal isn't complicated. Her message is simply that parents know better than doctors. If your doctor tells you (in so many words) that your child is a hopeless dolt, doomed to a life of misery that will require your almost constant attention, yet will almost certainly provide you with no satisfactory improvement, wouldn't you be vulnerable to McCarthy's message? She also plays the God card, and that appeals to many people who are in hopeless situations. McCarthy also has a story, a great story with lots of emotion and hope. It doesn't matter to her followers that the story may be more fiction than fact. She claims her son had autism and that she helped him recover from it. Greenfeld met McCarthy's son and was impressed with his "normalcy":
There are dark murmurings from scientists and doctors asking, Was her son ever really autistic? Evan's symptoms — heavy seizures, followed by marked improvement once the seizures were brought under control — are similar to those of Landau-Kleffner syndrome, a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage. Or, as other pediatricians have suggested, perhaps the miracle I have beheld is the quotidian miracle of childhood development: a delayed 2-year-old catching up by the time he is 7, a commonplace, routine occurrence, nothing more surprising than a short boy growing tall.
McCarthy, of course, will have none of this skepticism. Her son Evan was diagnosed with autism and through her efforts he recovered. Many parents of an autistic child want to believe her story. There is, of course, no way to prove she's deluded and that the original diagnosis was wrong. It doesn't matter that this is the only case in history where such a thing has happened. It's a miracle. She prayed to some god. He answered her prayers. She promised that god that if he answered her prayers, she'd start the crusade she's on. The rest is history.
The treatments promoted by McCarthy purport to treat an injury, specifically one to the immune or digestive system of the autistic child — and the agent that activists like McCarthy most commonly point to as the cause of the injury is the MMR vaccine. The antivaccine movement has by now gone through numerous iterations in trying to explain how autism happens. The latest alleged culprit is the sheer number of vaccines: at least 10 administered, in 26 shots, during a child's first 36 months. Each of these theories has been thoroughly discredited by scientific research, but that has done nothing to silence McCarthy and her Generation Rescue colleagues.
Nor is it likely that further research will have much effect on McCarthy or her followers' beliefs. She's not moved much by science, but people on the street who feed her ego have her ear: that's how she found out that her son is a crystal child and she's an indigo woman.
Some might say that McCarthy & Co. can't face the truth. That is why they must push on, despite being wrong about almost everything they believe regarding autism. It is too brutal and ugly to accept the facts that (1) there is very little hope for most of the autistic children of Generation Rescue parents; (2) there is no good evidence that any of the things they think cause autism do cause autism; and (3) there is no good evidence that any of the diets or other techniques they use to help their children "recover" from autism are effective. I'm not so sure. I think these folks truly believe that personal experience and intuition are superior to scientific studies. They latched onto the flimsiest of studies when they put their money on the work of Andrew Wakefield. Studies are irrelevant to these folks, unless they support experience and instinct. They value experience and instinct above science not because they'd be made uncomfortable if they had to accept the fact that the main component of their lives is made of falsehoods, but because they've been served well by the delusions they've developed and reinforced. It is emotion that drives their beliefs, not evidence. They're driven not so much by a desire to avoid discomfort as by the pleasure hope brings.
Fortunately, most parents (at least in the US) have their children vaccinated, but those who don't pose a risk for those who can't, such as the sick or the very young. Another harm of the McCarthyites is that every penny spent chasing the chimeras they propose is a penny not spent on research for a cure or for better methods of treatment that could provide hope, real hope, for hundreds of thousands of parents. When science-based medicine is perceived to be able to provide more hope than McCarthy gives, her army will disband and follow a new leader. When neither the quacks nor the scientists provide reason for hope, desperation like that of Gigi Jordan may lead to unthinkable acts for the rest of us to ponder.
further reading
Oprah and the mother warriors against science
Why Oprah (& millions of her fans) love Jenny McCarthy (and why it doesn't matter very much)
* AmeriCares *
